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Forums / Grief and loss / Depression as a result of my husband of 45 years having dementia.

Topic: Depression as a result of my husband of 45 years having dementia.

19 posts, 0 answered
  1. Scargill
    Scargill avatar
    18 posts
    21 June 2014
    My husband has been in "low level" care for 14 months & 2 weeks ago, whilst I was in hospital, was transferred to a Dementia Specific Unit. I was his carer for about 4 years prior to him going into care. My own health problems were increasing & I was finding it very hard looking after him. I have had depression for sometime but it has increased greatly since my husband has been "in care". Due to me not being able to tolerate medications for depression I have been having TMS which was helping but this last lot was during my husbands transfer to the D.S.U.  I have been extremely depressed since. Let me explain a little..... my husband was the first man I went out with as I was scared of men due to assaults as a 10 year old & a teenager.  But when I met my husband it was amazing. We have had 45 years of wonderful marriage. He was my rock. But he is fast disappearing & it is heartbreaking. It was suggested to me by one of the staff at the hospital I was in to write him a letter about our life. Well, I think I'm a coward as so far I have only been able to write about 5 lines. I' m scared,I think, of feeling even worse if I go back to look at the wonderful life with him I had. So.......... any suggestions, thoughts, ideas would/could be helpful. Yes, I know I am grieving but its so damn hard. Yes I have had suicidal thoughts but so far the voice in my head has prevailed  "Ellen you have your daughters & grandchildren to think about" so you can't kill yourself.  I hope I can keep hearing that voice.

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  2. Neil_1
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    4232 posts
    22 June 2014 in reply to Scargill

    Dear Ellen

    Thank you so much for coming to Beyond Blue and I really would like to extend a huge welcome to you as well.  This has been such a big thing for you to come here and provide your post and in some way, I hope by just posting it, has helped you a little.

    And look, you were able to write down things that have described a bit of your background - so that to me proves that you CAN do the next step for your husband to write him a letter.

    With regard to that - just think back and try to take it in smaller chunks.  Perhaps even look at some of the old photos (albums are great for helping things to be remembered) and use photos, perhaps to help you build a letter - a story.  Try it by beginning with dot points - and then later you can expand on it.

    Ellen, how many children/daughter do you and your husband have - and indeed, how many grandchildren?   Do you get to see them often?

    May I please ask also, for your husband now being in the DSU, I really don't have a strong background in this - are you able to let us know how much support your husband needs and is there some kind of guide given to how he'll be for the future?  I'm really sorry if I've asked too much there - I'm not wanting to push too far.

    I'm so pleased that you've got that voice telling you about your daughters and your beautiful grandchildren - PLEASE keep listening to that voice.

    I do hope that you can post back again soon.

    Kind regards

    Neil

     

  3. Scargill
    Scargill avatar
    18 posts
    22 June 2014 in reply to Neil_1

    Dear Neil,

    Bless your cotton socks. (I'm showing me Yorkshireness there!!)  Thankyou so much for your reply to my post. I was begining to think I had been far too personal in what I had written as there had been no -one replying.

    To answer some of your queries.............. I have 2 daughters & 2 grandchildren. One daughter lives & works in Canada. My other one lives in Vic. with her husband & 17 year old daughter & 11 year old son. I luv them all so much & yes I just hope I can keep that voice in my head telling me who I need to think of when I'm feeling suicidal.

    I am happy with the Unit my husband is in. They have a fantastic staff to patient ratio. They have great activities programs. 

    I am lucky that at the moment my husband still knows who we are but I know that he could get to the stage where he doesn't know us. His memory has deteriorated so much over the last few months.

    The letter is I think going to become a scrapbook. My grandaughter is going to help me. Well, she thinks she is going to get me organised !!!!!   It was suggested that a scrapbook might be even better than the letter. I'm willing to give it a go. I have to admit it still scares me because of the memories it will bring up. I guess I will see.

    Neil it has been helpful just talking to you. Thankyou so much.

    Bless you muchly

     

    Ellen

  4. Neil_1
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    4232 posts
    23 June 2014

     Dear Ellen

    Thank you for your kind words and thank you also for your lovely response back.

    Time time time – that is possibly the key, is it – with regard to getting your project completed yes??

    Scrapbooking does sounds like a very good way to go – and it would be possibly quicker, as you say, than doing a letter and that’s where you can insert photos, etc, yes?

    Now I’m just going to suggest this as an option – it’s something I’ve done for my Mum (after we lost my Dad) but also, for every holiday we (me and my own fam) go on, we do this as well.

    It’s in the form of the website, Blurb.  Where you can create your own book – you can create your own style of book, with loads of pictures in it per page, or one picture and a number of lines of text – the options are almost endless.  For our holidays, we create up a book that has mostly photos per page and you can insert a little line of text to let you know where it was, etc.  And so, you just pull your photos from your computer, where you’ve got them stored and progress that way.  Once it’s done up, you have to pay a small amount, not a huge cost per book – and press send, or something simple like that.  It then goes to somewhere in the United States and they work on it and produce it.  They do not edit it or change anything in it, so you have to be happy with your own finished product.  Then about 3 weeks later, on your doorstep, will arrive your very own book.

    My Dad was writing his life story and I was typing it up for him – sadly he got to where he met Mum (still very special).  I went to Blurb site and inserted my typed words into the book style that I chose – and along with it, I attached photos of Dad’s early days, etc – and ended up creating a 70-odd page book.  I gave it to Mum a couple of Christmas’s back and the response she gave when she saw it, will live with me forever.  :)  :)  :)

    May I ask where in Canada does your daughter live?   I only ask this as myself, my partner and our two children (16yo son and 13yo daughter) are heading to Canada this Friday;  for a 4 week holiday.  Getting more and more exciting as the days count down.

    Dementia is a terrible thing – is he physically ok at least??   Maybe the Blurb thing is not an option, but I’m pleased that I was able to tell you about it.

      

    I hope that you can stay with us on here – if you feel ok to do so.  It’s been really lovely “meeting” you on here.

    Kind regards

    Neil

  5. Scargill
    Scargill avatar
    18 posts
    23 June 2014 in reply to Neil_1

    Dear Neil,

    Thanks so much for your post & the suggestions & support there. First let me say that I find it helpful reading your posts & replying to them. Again.... thank-you so much.

    My husband is reasonably good from a physical point of view. He has a heart problem but it's getting short of breath if he goes  for a walk that's the main problem.Trouble is he  goes like there's a tiger chasing him. This was one of the problems they were starting to have with him in the Low Care place he was in. He was going out ( escaping ) & getting very short of breath. They also didn't know each time he managed to get out. So it was a case of when a place became available it was thought it was time for him to be "upgraded". I agree totally as it makes it so much safer for him. However, his memory is fast deteriorating now as well.

    Now to the suggestion you made that would include using talents I haven't got on the computer !!!!!  So, I'll have to stick to the Scrap Book idea. What you were talking about I'd need a 5 year old sitting at the computer with me !!! I think I will like doing the scrapbook when I get organised. Or when me grandaughter gets me organised might be nearer the truth!!

    My daughter in Canada lives in Vancouver. She's been there about 12 years. Originally went for 12 months but liked it so much she's still there.  When she moved there she paid for my husband & me to go over there. If you get the chance to see the Rockies do so. They are awesome.  You think you've seen your last mountain but you turn a corner & there's another one. Wow.  Also loved Lake Louise & Whistler.   I wish you a wonderful holiday & I'd luv to hear about it when you return.  

     

    Bless you & yours muchly

     

    Ellen

  6. Neil_1
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    23 June 2014 in reply to Scargill

    Hi there Ellen

    Hey, I'm not harassing you I hope.  I've just logged back on, and found your latest post.

    First things first - that IS great news that your husband is now in a place with upped care and 'security'.   I'm sorry, but I did giggle at the notion of him escaping the clutches of the other place.  I can just imagine it.  That is good news also that his physical health is still good.  That was a little bit like my partner's Mum;  she suffered from dementia - physically she was as strong as, but the dementia just got worse and worse for her.

    And pardon me for asking, but from what I know, there's nothing that can be done for it, is there??

    I've had another thought - for what about just in the interim, why not with one of your visits, take in a family album that you may not have looked at for a while - and so you both can look back upon times shared and cherished in the past and reminisce a bit??   Especially as the Scrap-booking thing might take a little while to get underway and finished - perhaps the odd photo album (if you've got 'em of course) might be a good thing for the two of you to share?

    Yes yes, we're going to all the places you've mentioned.  We fly into Calgary;  3 or so days there;   then we're hiring a car, and driving across to Edmonton, to spend another 2-3 days there;   from there we head for the hills.   I believe they're known as the Rockies.  :)

    We spend about a week and a half (give or take a bit) and we're staying in two different places.   First one will be Jasper;  and the second one is Banff.   I've seen photos of Lake Louise and it looks just magical.

    Then we drive towards Vancouver (having an overnight stop over at Kelowna).  Drop the car off at Vancouver, after a day or two and then we get on board a ship for a week's cruise up to Alaska and back.

    And to say we're looking forward to it is a bit of an understatement.  I have one more day at work, and then a couple of days to finalise things.  We fly out early arve on Friday.

    Really lovely to hear from you again and yes, if you've got more suggestions for sights to see, I'd love to hear them.

    Kind regards

    Neil

     

  7. Scargill
    Scargill avatar
    18 posts
    23 June 2014 in reply to Neil_1

    Hi Neil,

    No you are not harassing me at all. I like the idea of the Photo Albums, & yes we have quite a lot. I am also buying on line a slide viewer so that I can take over some of the slides that my husband took during his life both before we met & during our marriage. He's got 'undreds of 'em !!

    The plans for your holiday sound great. I'm sure you will LUV Canada, especially The Rockies. I can still see 'em in my imagination. WOW again.  I do hope you can get to see Lake Louise because it really is magical. No other word to describe it.

    Again thanks for your support.

    Bless you all muchly

    Ellen

  8. Scargill
    Scargill avatar
    18 posts
    23 June 2014 in reply to Neil_1

    PS.

    Nope there is nothing particularly at this stage that can be done to "heal" dementia. It's how patients are looked after with it that is important these days. I'm a nurse ( from last century !! ) & I cared for many people with dementia. The treatment /activities/care is so different now. So much better. We know so much more. Hopefully one day there will be a cure but not for quite some time I don't think.

    I just re-read your post & thought I'd add the above as you asked about it.

    Ellen

  9. Scargill
    Scargill avatar
    18 posts
    25 June 2014

    This last 3 or 4 days have been not good. Down, depressed, feeling unwell all the time. I wish I could say when people ask me how I am... "I'm good thank-you"  but it's just not happening lately. I'm not good. Any ideas on how to feel better. My Carer Counseller tells me it's okay to feel depressed. But really. Most of the time.My husband is also getting worse. I went to see him today & his memory is deteriorating quite quickly. I KNOW I'm grieving, but I'd like to "come up for air occasionally". Oh well. Hopefully sharing will help. Bless you all muchly.

    Ellen

  10. Neil_1
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    4232 posts
    25 June 2014 in reply to Scargill

    Dear Ellen

    I've found your thread - me thinks it's been moved, but that's ok - others will join us here.

    I'm so sorry to hear that things aren't going so well over the last few days.

    You know, it's annoying I reckon - perhaps the most "asked question" in the english language is:  "How are you?"  or some kind of spin-off from that.  Wouldn't it be great sometimes to respond with, "Mind your own bloody business".  But perhaps not, that's not being overly polite is it.

    I generally answer, "Not bad thanx".  Which is true - I'm mostly not bad - in fact, I'm bloody terrible.

    Ellen, share as much as you feel able too.  What about doing that photo album thing with your husband???  Not a whole stack of them, if he's not able to concentrate for any length of time, but perhaps just a few pages of something that you think might capture his attention (or hopefully, memory).

    I can't imagine what you're going through at the moment.

    Just with regard to your daughter in Victoria - as I'm not sure where you're living, is there any possibility that your daughter could come and visit you (and perhaps see your husband as well) in the next little while?  As a kind of support for you?

    Tis Wednesday evening now - I'll be back on during Thursday - and hope to hear back from you then, before we fly out on Friday.

    Kind regards Ellen

    Neil

     

  11. geoff
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    geoff avatar
    15556 posts
    26 June 2014 in reply to Scargill

    dear Ellen, my apologies as I have just checked out your post, but thank you so much for explaining your difficult and worrying comment.

    It's great that Neil has replied back to you, as no post should go unanswered, he's been a terrific responder to so many people, but now he deserves a holiday and from what he has described it does sound to be brilliant, and I hope so much that he and his family enjoy it.

    Can I just mention and I'm sure Neil won't mind if I tell you, that even though he has replied to so many people he himself is also struggling, and perhaps I should leave it there, because it wouldn't be ethical for me to say why, but it's on his posts, and although they are long about 1997 they are there somewhere, I will stop there.

    I have a friend whose husband too has dementia and they are in their 80's, and every month he goes into respite while she takes a few days off, and their friends say that she gives him a hard time, but this is the only way she can communicate with him.

    There are days where he will go and change his clothes multiple times a day, or you could be talking to him, and then suddenly he loses his thoughts and stops, where it could be half way through what he wants to say, and then half an hour later he then remembers his lost thoughts and then interrupts you and continues on.

    She has to mash his food in fear that he may choke, but he has a tendency to shove it in his mouth, so he has to wear a bib.

    Neil, my good friend has discussed many issues with you so I don't need to duplicate what he has said.

    Having dementia is such a terrible way to finish your last years of life, not only for the person but also the carer, but probably the carer is worse off, because if you have this disease you don't know what has hit you, so they don't understand what is going on.

    I feel so sorry for the both of you and I do hope that stay on this site and be able to talk to us. L Geoff. x

  12. Scargill
    Scargill avatar
    18 posts
    26 June 2014 in reply to Neil_1

    Neill  I wish you & your family a fantastic holiday. Enjoy the amazing scenery, come back safe & sound & with lots & lots of wonderful memories.

    Bless you all muchly

     

    Ellen

     

  13. Scargill
    Scargill avatar
    18 posts
    26 June 2014 in reply to geoff

    Hello Geoff,

    Thank-you so much for your supportive words & thoughts.  They are very welcome. I have found it very good being able to come to this site & talk to folk like Neill & yourself. As I live in a Retirement Village ( we came here 19 years ago )  & am in the oldest part of it, I haven't many neighbours. I am fortunate to have very good church friends who are there for me but knowing that people here have a better idea of what I'm talking about is a real blessing also. Anyone who says Christians shouldn't be depressed need their 'eads read. There are many places in in the bible that tell us of godly people being depressed. Oh dear , 'scuse me but I'm about to get "carried away". My daughter in Vic. has a Pastor who tells her that christians should'nt get depressed & as for taking anti-depressants .... well . As she is suffering with depression at the moment that is not helpful. I'm thinking of introducing her to this site. Ellen, shut up while you can !!!!

    I've started going through the photo albums & all the other loose photo's. Wow what memories. I just hope that my husband can really remember some of the times they show. Amazing & wonderful memories. Okay. Time to shut up before I flood me keyboard again !!  Thanks Geoff once more.

    Bless you & yours muchly

     

    Ellen

  14. geoff
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    15556 posts
    27 June 2014 in reply to Scargill

    dear Ellen, thanks for replying.

    It's interesting I had to do a search on the net about priests who had depression, well the board just lit up, because no one is immune from having this disease, and look at all the famous great leaders of the world who have also been struck down with depression.

    Your husband may have flashbacks about all the wonderful times you both had.

    It's amazing when I sit here and think about what is going to happen to me in the next few years it horrifies me, so I stop, we just take it day by day, as I have known people who have kept fit everyday day of their life, but suddenly pass away,

    I hope that your daughter finds some strength to be able to fight this awful illness, and I also hope that you you and hubby keep well. L Geoff. x

  15. Scargill
    Scargill avatar
    18 posts
    27 June 2014 in reply to geoff

    Mornin' Geoff,

    Took a photo album over to my husband this morning of the time we spent in Canada with our daughter 12 years ago. I think he truly remembered  some of it but not really sure. However, he certainly enjoyed looking at the Autumn colours. We were there in Sept. & our daughter took us all over the place. Awesome mountains, rivers, lakes etc.

    I decided to go over there this morning instead of waiting for "Sundowner syndrome" to set in this afternoon. He is definately much worse in the afternoon. Also had a phone call from the staff about 9-45 last night to say he was very agitated, upset & would I / could I talk to him 'cause they weren't getting anywhere with calming him down. So, spoke to him & managed to say the right things ( I'm learning !! ) & they told me this morning he settled /calmed down after that.

    All I need now is for me to calm down & feel good for a change. Now that I would really like !!!!  Ah well. See what else the day brings.

    Again thanks Geoff.

     

    Ellen

  16. Scargill
    Scargill avatar
    18 posts
    28 June 2014

    Maybe I need to be phoning someone but I'll try here first. Today is a lousy day. I've cried in me cornflakes, I've cried over my book. I'm just a mess today. So damn down & depressed. Made meself go up the street to my favourite Caff as they are friends not just folk who serve me a coffee. But I'm back home & feelin' so low. There has been no "up" time since my last lot of TMS but I think that is because my husband was put in the Dementia Specific Unit whilst I was havin' the last lot. It hit me more than I realised. So................ what do I do today to improve things. Damned if I know. Okay. That'll do.

    Ellen

  17. Girl_Anachronism
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    899 posts
    29 June 2014 in reply to Scargill

    Hi Ellen, 

    I haven't posted to you before as I have been in a funk of my own, but I have been following silently. It certainly seems a rough spot which you are in, and I can't imagine what watching your husband detioriate can be doing to you. 

    What to do on days  when dark thoughts are circling and we just can't get a breathe of air? Little things. I boff my nails, or redye my hair. If I don't have the energy for that, I make myself a cup of tea and sit outside to drink it, listening to the birds. Little things just for you, which you enjoy, or used to.  Good on you for getting out of thehouse in a mood like this, it is something that I struggle with.

    So little things. A wise friend called Neil once told me they may seem like little things now, but they are big things in the bigger picture. 

    GA

  18. Scargill
    Scargill avatar
    18 posts
    29 June 2014 in reply to Girl_Anachronism

    Bless your cotton socks for your post. Like you I try & "do" something when I'm feeling really down. It usually means going up to my local Caff for a cuppa. I think I said somewhere else that they are not just folk who sell me a coffee they are really good friends. The first time I was in hospital the boss lady & her partner came to see me. It can be very hard making yourself do summat. I know I have to really make myself get up & go. There are times where it's hard to get out of bed as well. But hey, what would I do in bed all day !!  So it's tellin' meself to get goin'. Usually works. Not always. But so far I've managed to talk myself into being sensible. When I am feeling suicidal I have this voice in my head telling me " Ellen you have 2 daughters & 2 grandkids who all need you"  So far the voice in my head has been heard.

    I thank-you again for your post & if it is okay with you I will ask my friends at church to pray for you. As will I. 

    Bless you muchly

    Ellen

  19. Girl_Anachronism
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    899 posts
    30 June 2014 in reply to Scargill

    Hi Ellen, 

    Keep hearing that voice. I don't have kids, but I am a crazy cat lady in training. I have photos (many photos) of my two cats on my tablet, so when ever I look at the screen saver, or the background there are my two precious reasons  for living. 

    In my worst moments, I just stare at those pictures and cry under my doona. Not a cheery or active method , but hey I'm still here. Thats if the cats aren't around themselves, in which case I pet them as long as they let me. 

    I have similar friends who run a shop, who I used to do martial arts classes for. They came and visited me in hospital too. Really good friemds, though I haven't seen them since the divorce due to the shop being a bit further away then my head will let me get to on public transport. One day though, I will visit them again.

    GA

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